Update about my Mother

After the public airing of my personal issues with my mom on CBC radio’s, White Coat Black Art, I learnt of the Ontario Consent and Capacity Board (OCCB).

I sent applications regarding my mother’s Substitute Decision Making. Since I was unfamiliar with the procedures and forms, I fumbled through an incorrect application prior to the correct forms and was able to arrange a hearing.

I went unrepresented to the OCCB’s Hearing, because I had already spent a great deal of money defending my mother’s basic human rights, and I felt the evidence I had was strong. It worked out in my favour that I did submit incorrect forms to the OCCB, because this triggered inappropriate slander and decisions by my father which illustrated the depth and consistency of his abusive behaviors.

The hearing lasted two days, and was difficult for me. It was a true David and Goliath situation. I am not a lawyer, and unaware of procedures and protocols. My fathers lawyer is recognized as being a top expert with regard to Consent and Capacity. Despite this major disadvantage, I was able to present my case, endure the cross examinations and have my problems heard by the OCCB, who had the authority to change Mom’s abusive situation.

The end result is that my father was removed as substitute decision maker and I was put in place for all personal care decisions for Mom. The decisions can be read at the OCCB case file HA 10 4596 and HA 10 4597. It was emotional to get the results. I was deeply sad that the process had taken me so much time, and my mother was now so ill. However I was deeply relieved that Mom would not become hidden to me again, and I could begin to search for some answers about what happened and is happening to her. I no longer have the stress of not being informed of my mothers well being (or passing). I sent out for medical testing as soon as I was able to for a confirmation of her diagnosis to make sure her treatment had been appropriate as well as enabling me to get the genetic tests done for the benefit of me and my daughters. Very Bittersweet.

My Secret is Out

August 2009: Mom is 52 years old in the photo

The CBC radio show White Coat Black Art, with Dr. Brian Goldman released Jan. 8, 2011 discussed the misuse of Privacy Law. Instead of being helpful, my mother and her loved ones suffered because Privacy Law.  The only person who was benefitting from the Privacy restrictions was my abusive father. Dr. Goldman's interview revealed a small piece of the abuse that has tainted my family for decades. Plus the role that Privacy played in my mother's demise.

Listen to the Podcast here:  http://www.cbc.ca/whitecoat/blog/2011/01/07/patient-privacy/

The root of the problem is that my father's legal power and control is stronger than my mother's ability to defend herself.  Privacy Law is merely the enabling mechanism--and in theory should be the easiest to correct.  However, the secrecy provided and protected by Privacy Law enabled my father to perpetuate abuse with impunity with no checks and balances.  Using my mother's case, I provided several perversions of Privacy Law:

Privacy Law allowed my father to shield his abusive actions from scrutiny.  The organizations and individuals who are mandated to protect and care my mother, instead blindly followed my father's abusive instructions.

Privacy Law allowed my mother to be moved to undisclosed locations so that she was isolated from her loved ones during her time of need.  My father treated my mother like a pawn in a shell game, moving her eight times between four institutions in one year, making it difficult for her loved ones to reunite with her.

Privacy Law prevented my mother from sharing her medical information with her loved ones--which was particularly cruel because my father claimed my mother's disease was genetic.  According to him, I was genetically fated to follow in my mother's dementia.  I was unable to pursue my own healthcare without a genetic confirmation of my mother's illness.  My father's  misuse of Privacy Law prevented my own healthcare autonomy.

Privacy Law caused my mother confusion and distress.  My mother had stated that she would willingly share information with her loved ones.  Her dignity was stripped when her health care team ignored her stated wishes in favour of my father's abusive instructions.

Dr. Goldman had followed up his interview on Privacy with the Privacy Commissioner of Ontario.  She claimed that my mother's issues were not a privacy issue but a decision making issue.  She refused to acknowledge the role that Privacy Law had in my mother's demise.  She refused to acknowledge that the Privacy Law was my father's shield.  Privacy Law provided the cloak of secrecy, preventing proper scrutiny of his actions.

The fact of the matter is that it would have only taken one person, who had access to the "private information" to stand up to my father, especially when his instructions were contrary to the Long Term Care Facility's Bill of Rights.

Allowing the power of the Bill or Rights legislation to override my father's improper use of Privacy Law would have gone a long way in solving my mother's and her loved ones' distress.

The big questions are which law is most powerful- decision making or human rights?

And what protections are in place when a law is being misused?

So, since the Privacy Commissioner shuffled the responsibility for my mother's abuse from Privacy Law to Decision Making Law, and let's pursue the solution she suggested:  Civil litigation.

In a time of heightened crisis, the option provided to my mom and her family was expensive civil litigation.  This is a solution that is described in the Globe and Mail as "legal fees exhausting their financial resources before they even reach a trial."
m.theglobeandmail.com/news/national/ontario-courts-only-open-to-the-rich-judge-warns/article12942343?service=mobile


So, to defend my mother's human rights, I needed to be willing to bankrupt my family.  It is a sham that the price to protect my mother's rights is prohibitively expensive.  The costs should be born by the abuser.

But the Privacy Commissioner did hit on the nerve of the issue.  It is undeniable that my mother has been emotionally, financially and psychologically abused by my father.  Unfortunately none of these acts are not considered a crime in Canada.  In fact, at every turn, it seemed the law seemed skewed to enable my father's abuse rather than protect my vulnerable mother's rights.  Because his acts are considered "civil" and not "criminal" wrongs, the costs to defend them are extracted from the victims.

In Canada, domestic abuse is considered a “family problem” unless there is physical harm ie. broken bones. It ignores the harm and pain caused by the abuse and isolation when the method is psychological and financial. Domestic abuse grows unchecked and unpunished all the time.  Domestic abuse flourishes under the watch of top administrators, similar to other historic human rights abuse issues. 

And yet, because his actions are hidden by the secrecy, provided by Privacy Law, it makes the only solution-- civil litigation--even more difficult.  A final irony is that my mother and her loved ones are denied from accessing information helpful for protecting her human rights.

Privacy Law creates quite the conundrum.